AIDS doctor saves the children, one at a time

A powerful respirator pushes air through the lungs of a 4-month-old baby girl with AIDS-related pneumonia.

Down the hallway at University Hospital in Newark, an 8-year-old child gets medication to lower her high HIV levels.

And nearby, a teenager with AIDS watches the intravenous drip that treats a new infection.

For these children and their doctor, James Oleske, the pediatric AIDS epidemic in America is not a distant memory, but a constant presence.

Twenty-five years after the epidemic's first warning, Oleske — one of the world's first pediatric AIDS doctors — remains deeply involved in HIV research and treatment. The professor at the New Jersey Medical School still follows 300 patients with the disease. Many of them are now teenagers and young adults.

Oleske was among the first to challenge assumptions that AIDS could infect only gay men and intravenous drug users. His groundbreaking 1983 article in the Journal of the American Medical Association convinced a skeptical medical establishment that children also could contract the deadly disease.

"If you talk about the handful of people who early on had the foresight to see that this was indeed an important pediatric problem, Dr. Oleske's name has to be among them," says Anthony Fauci, director of the National Institute of Allergy and Infectious Disease.

Oleske, who has a teddy-bear face and unassuming demeanor, recounts the early days of AIDS like it all happened yesterday. Pictures of patients, some of them now dead, fill his office, along with honors and awards.

But his most prized memento is Old Fred, a stuffed rabbit. Years ago, a little boy with AIDS told Oleske he thought he would die that night. Would Oleske look after his favorite stuffed rabbit? Oleske took the toy but reassured the boy that he was not going anywhere.

That night, Oleske's home telephone rang at 3 a.m. The little boy was dead. The next morning, Oleske found the bunny in the pocket of his lab coat — a humbling reminder, he said, that children know about death and "you have to stop and listen to them."

Oleske, now 61, has kept Old Fred ever since.

It's the late 1970s and James Oleske is a UMDNJ professor working at St. Michael's Medical Center in Newark. The pediatrician's expertise is immunology and infectious disease, treating unusual and rare immune disorders. In 1978, he sees a 5-year-old girl with profound immune dysfunction he can't explain. She dies, but he keeps a sample of her blood.

Soon other children come to him with enlarged spleens, obscure types of pneumonia or rare infections, their immune systems barely functioning.

Because inherited immune disorders are extremely rare, Oleske can't fathom the sudden emergence of severe immune dysfunction in two, then six and then a dozen children.

I am seeing all these kids here in Newark. Why? Then adults with this immune dysfunction start piling up and my colleagues ask me to do more and more tests in my immunology lab on adults. And we're seeing kids with these strange immune deficiencies. I'm thinking, is this inherited? Are they candidates for bone marrow transplants? But these kids had lots of immunoglobulin, so this was atypical of anything we saw in immunology.

As times passes, Oleske watches a great human plague unfold. In 1981, the U.S. Centers for Disease Control issues an alert about five gay men in Los Angeles with pneumocystis pneumonia. No one knows what is causing the immune dysfunction, or links this new disorder to children, certainly not to those children in Newark.

Then drug users begin showing signs of the disease. Leon Smith, an infectious disease physician at Saint Michael's, asks Oleske to draw blood from one IV drug user. As a pediatrician, Oleske is good with small veins, and IV drug users usually have bad veins.

I'm drawing blood from this guy and he says to me, ‘Dr. Oleske? You don't recognize me, do you?' I said, ‘No, I'm sorry I don't.' He says, ‘Don't you remember my little girl who died of that strange pneumonia that you couldn't understand?' This man is wasting away. I take the blood immediately to my laboratory and see he has no T-cells. Clearly he has this disease. And the eight or nine children who have this disease we can't explain must have it, too. It was like a bolt of lightning.

Oleske and his colleagues embark on an investigation into the lives of these pediatric patients. Eventually they see a disease, like syphilis, that can be sexually transmitted and also passed on to babies by their pregnant mothers.

By the time Oleske's journal article comes out in 1983, he and his team are treating 40 to 50 children. They find creative ways to help children suffering from a disease with no history, and no real treatments. Despite their efforts, many of these children die.

One devoted foster mother whose child dies gives Oleske a poem about an old man who chides a younger man for trying to save starfish that have washed ashore. He says the man can make no difference to the thousands of beached starfish. Then the young man throws one starfish into the sea. "It made a difference to this one," he says.

I told our team we must take as good care as we can of the one child in front of us. If you look up and see everyone dying you give up. We were all part of a team. I was not the doctor making all the decisions. I didn't know how to express my grief. I decided to go to funerals. Eventually, I almost had my own parking space at Perry's (Funeral Home in Newark.) I wanted to show respect for the families and show how we cared for the children.

In these early days, Oleske sends blood samples to Robert C. Gallo, one of two researchers who, in 1983, discovers that HIV is the virus that causes AIDS. "I am indebted to him for his wonderful collaboration, without which we could not have learned what we know about pediatric AIDS," Gallo said recently. After a test is available, Oleske checks out the blood of the first girl he treated in 1978. It's positive for HIV.

The staff of the pediatric AIDS program become especially close to one child named Cynthia. She lives beyond expectations, giving the staff hope that they can make a difference. Then she dies. Everyone is devastated. Later, Oleske is asked to speak to the children at Cynthia's church, a cramped little building located near a burned-out bar on a street littered with abandoned cars.

Inside are 20 children and 15 adults around an open kerosene heater. A woman named Sister Evelyn said, ‘Can the children ask you questions?' I said, ‘Can I give honest answers?' She says yes. The children wanted to know why Cynthia died and if she suffered. I said she did not suffer. One adult wanted to know if the U.S. Army created AIDS to kill black people. I said it was too hard to create this virus, but the genocide would be if we don't treat people. Two hours zip by. Sister Evelyn said they didn't have anything to give me but a blessing. A little girl pulls out an old La Choy soy sauce bottle with the label removed. She puts oil on my head and the children sing a song. I felt blessed for the first time in my life.

But the worst is still to come as the UMDNJ-Pediatric AIDS program, which moves to United Children's Hospital in Newark and then to University Hospital, experiences its highest death toll ever. The year is 1995.

Thirty-five children die. A year-end memorial service is held at a Baptist church in downtown Newark. A local high school choir is asked to sing.

What we didn't anticipate is that most of the kids in the choir knew some of the children who died, and they could not continue singing. For this memorial service we just got together at the altar — the children, the families and the people in our program — and we had a good cry. Imagine losing 35 children in one year?

Slowly, the doctors and nurses get new tools to help the children. The drug AZT can help people with the disease and, as important, it can prevent HIV transmission from pregnant women to their babies. The drug is tested for the first time on a woman at UMDNJ. Her baby is born healthy and free of HIV. A remarkable drop in the number of new babies born with HIV follows.

The number of New Jersey children born HIV-infected since the beginning of the epidemic is 1,179.

Last year, six New Jersey children were born infected.

That's still six too many for Oleske, who complains that 10 percent of the women who deliver babies at University Hospital have had no prenatal care. He complains that charities and government agencies have scaled back or canceled programs for pediatric AIDS.

He knows the number of new pediatric AIDS cases has fallen dramatically. To Oleske, that's no excuse. Children still need help and new treatments.

The outspoken doctor has even criticized his own employer, UMDNJ, and in 2004 he sued the university for breach of contract and back pay in a case settled out of court.

"Sometimes people who are very passionate don't play the political games," said Robert Johnson, acting dean of the New Jersey Medical School.

"But I don't think Jim's outspokenness is thought of in a negative way. He has accomplished an enormous amount. In terms of papers and grants he is one of our most productive faculty. He could sit back now and do nothing and instead he does things all over the world."

For Johnson, the big fear is that Oleske's story will be forgotten by a new generation of doctors.

"Every time I get the chance to tell it I do, even if it embarrasses Jim," Johnson said.

Oleske is a rainmaker for the university and during his career he estimates that he has generated more than $70 million in research grants. A French countess impressed with Oleske's work donated $2.25 million to what is now the UMDNJ-Francois Xavier Bagnoud Center, named after her son killed in a helicopter crash in Africa.

Oleske now trains young AIDS doctors who return to their homelands to treat children, and he has traveled to Uganda, South Africa, Russia, India and other countries. He works with groups such as the Children Affected By Aids Foundation.

"They have not forgotten the domestic agenda," Oleske says of the Los Angeles-based organization.

Science can still learn from his earliest patients, including the first girl he treated in 1978. She was born in 1973 and Oleske believes she was the first documented case of AIDS in the world.

He recently took tissue samples obtained from her autopsy to a Canadian laboratory for analysis with the latest virus technology. The goal is to learn how the virus has changed. Oleske hand-delivered the samples.

"They're precious," he says.

The doctor still dreams of additional testing for a therapeutic vaccine he developed. The vaccine marshals the immune system to battle AIDS in people already infected with the virus, but it doesn't prevent infection. He tested his vaccine in a dozen children with AIDS back when few options existed. He believes it helped them, but he has not had additional funding. It remains one of his great research disappointments.

But he still has his starfish.

One baby he cared for 25 years ago beat the odds and lived to see the days of new drugs that are turning AIDS into a chronic illness instead of a deadly one. The young woman recently graduated medical school and will, fittingly, begin her residency in pediatrics.

Carol Ann Campbell covers medicine. She may be reached at (973) 392-4148 or ccampbell@starledger.com